My name is Melissa and I am writing this as a close friend of Daniel's family. The family did not ask for me to do this. Leah (Daniel's mom) is not the kind of mom who would ask for help, even when she needs it the most. She is an incredibly strong and resilliant woman who will happily take the weight of the world on her shoulders, especially when it comes to her family and especially when it comes to Daniel.
Daniel turned 13 about 2 weeks ago (I know, a big one!) but unfortunately he had to spend it at BC Children's Hospital after arriving from Victoria by life-flight.
Daniel is one of the sweetest and kind-hearted boys you could ever meet. He is quiet but not shy, he's cool but not on purpose, and he's the kind of kid who loves his family like crazy.
Daniel was born with renal failure. He was on dialysis until he had a kidney transplant at the age of 5.
Things have been good until this summer when he started rejecting his donor kidney. Went through treatment for three weeks.
Then recently was diagnosed with Noro virus and also had hypertension. Due to these things, there have been uncertainties about his kidney and it’s function. Daniel and his family are now waiting to find out if he is going through another rejection.
Daniel is the older brother of Nina and son of Leah and Cosmo and step-son to Mike. They are a down to earth, hard-working Vancouver Island family who are living and working in Sooke and Victoria. Daniel's parents are self-employed and have not been working regularly for the past 3 weeks as they have been making trips back and forth on the ferry from Sooke to Vancouver splitting up their time between spending as much time as possible with Daniel and mainting normalcy at home for their daughter. Needless to say, this is a lot of travelling, a lot of time witout the option to be able to continue working and a huge and unexpected expense on the family.
Here is a photo of a happy Daniel with his Dad, Cosmo!
HOW YOU'RE HELPING
Any funds raised will go directly towards Daniel being able to have his support team around him, at his side, when he needs them the most. The funds will go toward travel, accomodations and day to day expenses of being away from home, unable to work while caring for a sick child and anything that Daniel may need to be more comfortable.
We are all hoping for the very best outcome which is that Daniel will recover and go back to the regular cool kid he always is.
All we know now is that Daniel must stay put and we really want to help Daniel's family to be able to stay by his side.
UPDATE: Feb 2nd. Daniel had a biopsy today. He has been with hs Dad this week. His mom is on her way to be with him right now and they are waiting on the results of the biopsy. Thank you everyone for your donations, it is a very big help with the expense in getting them back and forth to be with him.
UPDATE: Feb 5th. We have received an update from Daniel's Mom this morning and we wanted to post an update. It's not the news we were all hoping for but having a plan and moving forward is what they will do. We have updated the goal to reflect the family's journey ahead.
Daniel's Mom, Leah:
I am overwhelmed by the contributions that everyone has made. It truly is the most helpful thing right now.
Things with Daniel are complicated and the journey is going to be long.
We determined that yesterday he will go back on dialysis for sure and the surgery will happen this week to insert the catheter. Then we will go through education on all of this as we haven't done it at home in years.
So Daniel will be on dialysis as we start moving forward for another kidney Transplant. Not sure the time line but sooner then later more then likely.
UPDATE: Feb 7th. Daniel's Mom sent us another update today. It's been a very tough couple of days for Daniel but overall it sounds like he's being a real trooper and staying positive.
Today is a big day for our Daniel. He is heading in for surgery to have a dialysis catheter inserted. He is for sure sad and nervous but also as usual keeping positive and strong.
The results from two biopsy’s last week have not yet given any news that will change the course of what is happening.
We are on the road to helping his body get cleaned out with dialysis then start getting him ready to transplant again.
Thank you all for such incredible love and support.
UPDATE Feb 12:
Hello everyone, we have another update and we're so glad it's a positive one! Daniel was able to come home for a few days of comfort and his mom has sent us this update:
Hello Everyone, I wanted to give you all an update on Daniel and the progress with his health and wellness. His surgery last Wednesday went very well and he now has his PD catheter inserted to allow for dialysis to begin. He has been very sore and sad and the idea of needing so much intervention after having 7 years of freedom (with a transplanted kidney) has been a blow. In saying that he is very proactive with his personal care. He wants to learn how to do his own dialysis and is curious about how it all works. He will begin education along with myself and his father. This kid would be an incredible doctor! Today is the day that dialysis starts and then over the next two weeks we will get educated and hopefully soon after be homeward bound. All is still up in the air. We need for his body to be stable and safe before going home.
With all that said we were able to come home for a couple days to help boost Daniel's mental and emotional health. The first night he got into bed he started to cry and said "Mom this feels so good I'm gonna sleep good tonight" total heart melting moment.
The journey continues and again all the support and love from community has been incredible. This has made things so much easy in being able to focus completely on Daniel.
He is bound for success!
This pic is the day after surgery
UPDATE Feb 22nd:
I wanted to give everyone another update on Daniel ❤️
Since the last post lots has changed for Daniel for the better. He had surgery and was feeling quite terrible until we were able to start dialysis. Slowly over the week following he has really started to remark on how much better he feels. Cleaning your blood and your body is the best! Kidneys rock and when you don’t have them working for you then dialysis is were it’s at.
We have all been spending a lot of time getting trained again in how to perform dialysis at home. It was a shorter task as we had done this in the past for 5 and a 1/2 years.
The difference this time is that Daniel wanted to learn the whole set up process. He is such a cool kid. Always wanting to know what’s happening with his body and how he can understand everything better.
This kid blows me away with is love of life and will to live.
So as of last night we have been released and we are home.
I can’t tell you how great it feels to be home in our beds and feeling good.
In saying that we still have a long road ahead with transplant in Daniels future.
We will start with just simply getting him feeling good then all will follow.
Again I want to extend my love and gratitude to all of you in support of our family.
We could not do this without our community.
I will continue to give you all updates. ❤️
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